How are people with liver mets doing?
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Dear Lumpie, your MO, what systemic treatment does he/she suggest? Is she/he more like "ehm, we have to try something" or "this should work and save you"? If the former, I would think of getting second opinion or changing MOs. I am always so mad at this situation: doctors are specialists but when it comes to decisions, we have to make them, we have to look for possibilities and to choose, and become overwhelmed:/ They are never responsible, they never give guarantees... what kind of scientific/practical field is that?
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Saulius,
I truly think that that "we have to try something" docs use that as a sort of protective mechanism for themselves. The other day, my current oncologist, who is supposed to be one of the top 50 oncologists in the US, laid out all of the next options for me after Ibrance/faslodex. This was on a video visit, which we are using a lot right now in the US. Then she looked into the camera right at me and said "But which treatment should we try next?" She paused, as if she expected me to answer. Huh? Isn't that what she is paid to do -- suggest the best one among the options? I looked right back at her and said -- isn't that what you should be telling me? which is the next best treatment?
The video visit ended with no resolution of the matter.
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Absolutely you are correct, BevJen. They are the experts and the ones we expect to advise us. Sorry for your bad encounter. Reminds me of my MO advising me to radiate my bone mets and I was onboard. However, I met with the RO expecting him to concur and when I asked him about it he said to me, "Well, if you want to, but it's up to you." I thought, "What? I'm looking to you to tell me about it!" I told my MO and that I didn't feel informed at all; she was furious at him. She said, "Yes, that's the plan. Where's he been?" The two mets were radiated and I'm still NED in bone. Decisiveness is exactly why I love my MO. She knows I research it all, but she always tells me what she thinks I need to do and why. I hope you get the resolution you want and need.
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Bliss,
My MO knows that I research everything. I even send her articles that I think she might not have seen about lobular, because it's not her specialty. I think that actually scares her more, and she doesn't want to "cross" me -- but I do expect her expertise in decision making. Never easy!
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If an oncologist is scared or threatened by patients who research, they are probably a bad match for those patients. I fired my first oncologist who would say, “It's up to you" whenever there was an important decision to make. Oh, excuse me while I go get a medical degree and board certification in oncology. I'll be right back. Also he basically refused to read and discuss my research. They are being paid for their expertise. Yes, I want to have input, but it is not fair for the oncologist to withhold advice. If they don’t know what to do they should say so and refer for a consult.
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Shetland, your comment is spot on and exactly my sentiments when it comes to the MO/patient relationship.
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Wanted to let you all know...my Bilirubin on my on week of chemo, actually the day of... has been 3.2 and 2.9 and this past Thursday it was 1.2!!!!!!!!!!!!!! It has been running 1.2 on the week after/before chemo but not on the week/day of.... I was SOOO happy... while this is great because it means the Doxil is not stressing out my liver ...I am praying it also means it is working... !!!!!!!!!!!!
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Nicolerod, good news is always welcome. Happy for you.
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Nicole, great news your bilirubin is going down! I hope Doxil is working too.
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Dear Nicole, when you say BIL is 1.2, what are the units? It is just interesting because in Europe we have totally different numbers, so it is difficult to understand/compare. Let's say, my wife's TBI (Bil total) was 8 last time (norm is 5-21 umol/l).
Now on the topic of doctors who protect themselves. This is crazy, and we met this several times with our new MO too. If I would be a MO (I am an engineer now), I cannot imagine letting someone leave without a solution and a definitive plan given. My patients and their worries would be my problem, and my headaches, and my sleepless nights. And it is not about the money. It is about your dignity as a human... How could I look into the eyes of someone and say "there's nothing I can do"? There's always something we can do if we try hard enough. Where are these devoted warriors who swore to fight for human life no matter what? Only these who fight for us as if they'd fight for themselves should be called real doctors.
Saulius
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Lumpie- You are in my thoughts.
Nicole- Woohoo on the lowering bili tests !!!!
I will get CT results tomorrow at MO visit. Had done last Wednesday. Nervous.
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Saulius...the range for bilirubin here is 0.1 - 1.2.... I am usually way over that...so for me to be 1.2 that is GREAT!!
Looks like this on the paper result:
Bilirubin, Total 1.2 mg/dL 0.1 - 1.2 mg/dL 0 -
Candy lifted you up in prayer for peace while you wait for the CT results!!
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Dear Nicole, mg/dl - that's it, now I understand, thanks. I believe it will continue to decrease, as chemo is killing the bastards! Best luck for scan results for Candy too... Saulius
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Cross post.....
So I just signed off from my virtual MO visit. I wanted to post here how it went. Lasted about 10 minutes. MO said my scan "looks good" and no change in treatment. I told her I had not seen results yet and could she click for it to flow to patient portal. She said to give her till end of day to finish her in-box stuff. So I don't know specifics (size of liver met this time, etc). I will be looking for results so I can read them for myself- I read every word of the results and pick it to death, you all know what I mean. We discussed my upcoming dental appt and if I could have a cleaning. Yes to cleaning, but anything else would need to be off Xgeva for a period of time. No antibiotics before cleaning--doing on week off Ibrance. She did not say when I will "see" her next. So I need to verify next appt. I go to office this afternoon for blood draw, Lupron, and Port Flush.
Thanks for the well wishes for my scans.
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Candy! Yeah! No change in treatment is really good news.
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Wonderful news Candy and Nicolerod.....love to read that treatments are working For us!
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Saulius ..YES praying those little buggers are DYING!!!!!!
Candy WHOOO HOOOO YES!!!!!!!! I am so happy for you!! Thank you Father for answered prayers!
JFL- Also good news I know I said it in the Jane thread but it bears repeating...WHOOOO HOOOOO So BEYOND HAPPY FOR YOU and your FAMILY!!!! (((((HUGS)))))
You are my inspiration...my hope!!!
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Nicole, sure they die, I personally have no doubt about it knowing your ki67 and grade... just the right chemo is needed and suckers will suffer a lot:>
Many good news in these forums. Shetland, JFL, Candy, Nicole, others... something good is happening, we just need time to understand what that is!
Saulius
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Hi all, glad to get back on this thread, especially to hear about your experiences with Y90 which my MO also pooh-poohed when I brought it up. I did find a radiologist that does it, mostly for liver cancer but was willing to look at my scans. So I am definitely going to follow up with that.
I find myself going back and forth between wanting to positively explore lots of options and wanting to just give up. There are implications for exploring all options both financially and emotionally. But we have a couple of rocky weeks aheas. the home care nurses that keep track of me (angels) have a supervising doctor who has been alarmed at my hypercalcemia (almost 4 when albumin corrected) and I have been on IV fluids and shots to try to get it down. The Doxil shut down my immune system in the meantime, we got it back up with those painful gut shots but I got a bacterial infection with high fever (luckily resolved with other bag to hand on the IV! They have tested my thyroid and parathyroid which have low values which is good because it means they are trying to compensate for the tumor related hypercalcemia. My liver values are all over the place, not least my GT so no painkillers for my constant pain. (Xanax helps). (Negative for COVID, wohoo!)
I shelled out two thousand dollars for the Foundation One genetic tests, finally got the pathologist to send over a tumor sample from my liver, heard through the grapevine (nice nurses who will read my chart to me) that there weren't enough tumor cells to make a determination. Also mumbles that they will do a new liver biopsy (ouch) and bone marrow biopsy (double ouch) and look at the new scan (taken tomorrow, but it usually takes 2 weeks for them to bother to look at it). Problem is that last visit I was already basically told I was out of options. caveat, if the new liver biopsy shows that I my tumor biology has changed again and I am now TNBC I may qualify for immunotherapy. Or maybe the gene tests will suggest a new international study.
Meanwhile two surly teenagers are finishing the school year, one of them finishes high school. My goal was to live long enough to be able to throw her a fun party but well, this freaking virus has taken that away. Plus any chance of seeing my family or friends in the USA.
Thanks for letting me rant. Love and hugs to you all, AMY
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arolsson- You are really going through a rough patch. Prayers for some effective treatment to keep you hopeful and going forward!
I understand some of what you are going through. After 2 Liquid biopsies showed nothing, I had to have a second Tissue biopsy to do the genomic testing because of lack of cells from the first one. It showed I had 5 mutations and only the esr1 gave us any actionable data that I was most likely AI resistant. Glad I did it though- eases my mind from the what if’s
Rejoicing in everyone’s good news here- I have some too. The only activity on my last PET was a smalllung lesion and I just got approved for SBRT to whack that one.
Hoping you all keep getting good reports And our lives return to some kind of normal.
Dee
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Thanks, Nicole, for the shout out! As Nicole noted, I posted on the Jane McClelland/COC Protocol thread that I had a PET scan this weekend after 6 months on Gemzar + COC Protocol and it looked really good for me! I am so happy. I was worried I was progressing. My liver continues to hurt in some areas after 6 months on Gemzar, which must be dying mets. I have always had a heavy liver tumor load for the last 5.5 years so my standards may be different than others as to what constitutes "good results". The tumors are shrinking and only a small area mildly lights up on the PET with metabolic activity. When I started Gemzar, over half of my liver was lighting up with moderate-high metabolic activity. This is my 8th line of therapy, not counting a few short-term, temporary treatments I have taken over the years and not counting Y90. I haven't seen a PET look this good since I was on my 1st and 2nd lines in 2014 - 2017. I will take it! I also posted over there that I think the COC Protocol I am taking is working synergistically with Gemzar, although no way to know for sure. The COC Protocol consists of a combination of 4 repurposed drugs - mebendazole, metformin, doxycycline and atorvastatin, which are prescribed and monitored by an oncologist at the Care Oncology Clinic (COC). It is intended to be an adjunct therapy, added to one's primary treatment. The COC is studying this repurposed drug combination as adjunct therapy and has an ongoing trial taking place right now. Metformin specifically has been shown to make cancer cells more sensitive to Gemzar. Apparently, it reduces HER2 expression and indirectly downregulates M-TOR. My COC MO has another BC mets patient who has been on Gemzar + COC Protocol for over a year, which is a long time to last on an IV chemo.
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JFL..that is indeed good news! I am glad the gemzar plus the adjunct COC protocol have greatly improved your scans.
It is important information for all of us to know that treatment can work after many lines. You, Shetlandpony, 5osgirl, SusaninSF, leftfootforward, others..you guys keep finding a way to address ongoing progression successfully.
Cheers to you!
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Hi y’all. I’ve been absent for awhile. Holding my own. Now the ship is sailing and I want to turn it around now!
I usually manage a drug for 18 mo - 2 years.
I’ve was on ibrance, moved to xeloda and it just quit. Scans were good in Feb after liver rads. Now boom. Double the number and size.
MO wants me to try Verzenio and faslodex and a lymphoma drug. I don’t believe the V/F combo will work. I failed all the hormonal blockers.
She was kind enough to call me after my scans last week but I can’t get in to see her for two weeks.
I have the P1KC3A mutation. I’m Hormone positive. I had the generation one test in January.
I’m just looking for advice, strength, treatment options.
Thank yo
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JFL- thank you for the share and recap! You are truly a pathfinder in the fight against this disease! It’s definitely not a one size fits all and you have found success even with multiple liver treatments🎉. This is inspiring to read. This may also allow you to go back to prior treatment with success again!
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JFL- Congrats on the good scans. Wow you have been through a lot and keep on going. 6 years with liver mets for you !!!!! I hope I do as well.
Zillsnot4me- I cannot give you any advise about the V/F combo. Hope some more chime in to help. Just wanted you to know I am thinking of you and will pray for you.
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JFL -- thanks for the continued info about the COC protocol. I am so happy that it seems to be bolstering your current treatment and that you are doing well. That is so encouraging for all of us.
Zillsnot-- If you have the PIK3 mutation, have you discussed Piqray with your MO? That specifically targets that mutation. There is a separate thread on that drug, but it's not as extensive as, for example, the Ibrance thread. Also, and I am no expert on this, but faslodex, which it doesn't look like you've been on, operates differently from a lot of the estrogen blockers, so I wouldn't totally discount the Verzenio/Faslodex combo. I had my initial metastatic site in 2006 while on tamoxifen; then was on letrozole for 13 years when it failed. Am now on Ibrance with faslodex, and my MO thought the faslodex would work because of the differing mechanisms between that and many of the other estrogen blockers. Something to discuss with your MO....
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JFL--congratulations! we could all use a little good news. Someone asked me once if as a metastatic BC patient it was hard to hear about other MBC sisters doing well when I'm not. THough I have to admit some jealousy for friends without MBC sharing great news (weddings, new grandchildren, other things I'll never experience) I am always more than happy to hear about MBC patients doing well. Even though our prognoses and diagnoses are all so different. so--yippee!
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I haven't been here for a few days. It seems like a lot is happening. I wish there was a magic bullet we could use when the hard times come. It's easy to say try not to give up hope but it's much harder to do.
Sometimes we get pleasantly surprised. I certainly was. I had no faith in Faslodex after failing so many other TX. I was shocked when I got my PET results and it showed it was working.
On Monday I go back to my MO. I will actually see her NP. We just started some in person Dr appointment. My MO, however, mine is still doing telemedicine only. Don't know why. I think NP will order a 3 month PET. I hope so, six months was too long of a wait for me last time. Also it would be interesting to see what my liver looks like at six months post y90.
I'm happy for all the good news I read. I'm praying for all of you who are struggling right now.💞
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Grannax- I was wondering about you this morning. Hadn't seen you post in a few days. I am glad my girls are here and wonder about one when I don't see them. In your pocket on Monday for your visit and hope you get the ok to check the PET.
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